Victoria was enormously grateful to her caregivers and family and friends. Every day since she had entered the hospital, one of a large circle of friends dropped meals off at the Whelan home back in Santa Monica. They placed a cooler on the front porch that was invariably overflowing with healthy, delicious dinners, each carefully labeled to accommodate Will’s allergies. Pat’s family was especially supportive and spent many weeks camped out at their house so that Pat could be with Victoria at the hospital. He was juggling the responsibilities of his business, the needs of his sons, his wife’s illness, and his own heart condition. I began to see, firsthand, the toll a prolonged illness takes on a family or even entire communities. The love and care my sister’s family received was overwhelming. We made sure to count our blessings; many sick people are not as fortunate to have so many resources and devoted friends.
One afternoon, Victoria and I watched the third part of a documentary on cancer that had aired on PBS the previous month, based on Siddhartha Mukherjee’s 2011 book, The Emperor of All Maladies: A Biography of Cancer. Some of the earlier episodes were depressing, covering the darker days of cancer treatments that ranged from radical surgery to devastating chemotherapies. They showed the ineffectiveness of bone marrow transplants for advanced breast cancer in the recent past, a treatment strategy now abandoned. This third installment looked to the future, toward potential areas of enormous promise, such as immunotherapy and, more specifically, less toxic therapies for cancer.
The problem with Victoria’s treatment, from chemotherapies to transplant, was a dearth of knowledge. We currently do not know enough to conquer this disease with any elegance. So much of what we do in cancer treatment is nonselective and unrefined. The drugs we use attack the most rapidly dividing cells in the body, fundamentally damaging them by inserting mutations into their DNA. When this is done in the leukemic cells it is beneficial, yet when it occurs in otherwise normal cells it is harmful. Even if they undergo successful treatment and cure of their disease, leukemia patients are at risk for secondary malignancies that are the direct result of the curative treatments they have gone through, which damage both normal and abnormal DNA.
Immunotherapy is a way to master signaling within the body so that a cancer cell will elicit a response that causes or encourages the body’s own defenses to take over and kill the abnormal cell. Because cancer cells are “us,” the body often lacks the ability to recognize them as a threat. Immunotherapy offers the promise of triggering such a response within the patient. If only we’d had the tools to undo the mutation that led to Victoria’s leukemia, or to mark these mutant cells as foreign and dangerous so that the body could use its internal defenses to rid itself of these abnormal cells, she might not have required a transplant in the first place. Despite great advances in the treatment of leukemia, the treatments are still plagued with limitations and brutal side effects.
Victoria was receptive to the potential of a bright future in cancer care. She was focused on that horizon. When I spoke with her about the possibility that she might die from this illness, she immediately shut me down. This was simply not going to happen to her. I let it drop, but I was troubled by her unwillingness to consider death. This was one of her ground rules: I would answer her medical questions and interpret the journey she and her family found themselves on, but I could not suggest that she might not survive. It was a tacit agreement between us, and I didn’t have the confidence to press her.
My sister continued to channel all of her energy into being the most compliant patient she could be, religiously following her doctors’ instructions, doing absolutely everything she could in order to live. She repeated, almost as a mantra, that she needed to live for the sake of her husband and their sons. It seemed to me that Victoria felt it was a sign of weakness to explore the idea of dying. She had indicated to Dr. O’Donnell and Dr. Fischer that she was not willing to discuss the notion of her death. She was giving treatment her all, and she was going to win!
I just called Pat in tears and he was, of course, sympathetic, but in ending, he told me to stay strong. It is interesting that the conversation can be entirely different depending on whom you call. My mom, for example, would have taken me down a path of how hard this all is. Pat always wants to fix things—in general terms, isn’t that more male?
I watched the third episode of The Emperor of All Maladies with Jody just now. He deemed the first two too depressing but the final one uplifting. It was certainly interesting, as they are doing so many innovative things with immunotherapy, among other things. Jody said something along the lines of how I am not in control of this. I beg to differ. I believe our minds are powerful allies and that we don’t have to simply roll over and wait for things to play out as they will.
—APRIL 22, 2015
It seemed to me that my sister’s refusal to admit the possibility of defeat denied her family a chance to plan and to say goodbye. I’m not sure this would have softened their loss, but I like to think it would have helped mitigate some of the shock and despair that came with her sudden death. People who are willing to consider their own mortality seem more prepared and accepting of their fates.
As a society, we often interpret death as failure, yet we will all die of something. Have we perhaps overmedicalized the concepts of life and death, so that death has come to represent a treatment failure? Accepting death as natural and unavoidable both enriches our lives and allows us to make balanced decisions about when to treat diseases and when to change course toward palliation and comfort. Often, as was the case for Victoria, the treatments have toxicities and detrimental side effects. If they cease to work or if the potential damage outweighs the potential benefits, we need to consider whether to continue with treatments. If we regard progression of disease as an inherent failure, we will tend toward pushing treatment rather than pausing to have those difficult discussions about discontinuing therapies with limited benefit. This avoidance applies both to patients and their doctors.
As with many things in medicine, short-term suffering is required for the potential of long-term benefit. This pertains to surgeries as well as chemotherapies for cancer. Many of the side effects Victoria endured, which were actually the source of her symptoms, were the result of her treatments rather than the leukemia itself. Her declining blood counts, fevers and chills, painful rashes, and burns were all the result of damage inflicted on her normal systems in an effort to kill the leukemic cells. She hit her nadir when there were few, if any, circulating leukemic cells in her blood, but it was the specter of their return that motivated her and her doctors to push forward.
My numbers have begun to rise! WBC [white blood cell count] is 0.5! Yahoo. I am so encouraged.
I seldom watch Grey’s Anatomy and stumbled upon it Thursday night. I was quite surprised that Dr. McDreamy was killed off. I thought of it just now and began to cry. I don’t think it is really about Derek. I think it’s the good news about my WBC.
I also think the tears are a lot about how moved I am that Jody spent so much time at my side. He has become a truly kind man with whom I feel very close. I felt like I got my brother back. He wasn’t gone before, but we were both caught up in our busy lives and we hadn’t made seeing each other priority. I believe that has shifted now.
Jody wrote to me in a text: “Be strong, my sister. I will miss you, and I am sorry to be heading home. You are everything a brother could wish for.” Wow. And then, “It has been my pleasure to spend time with you. It is I who should be thanking you for allowing me the opportunity to be with you. I agree that future visits should be in a more pleasant place. But I will tell you that City of Hope is a special place. You have wonderful people looking after you, and for the time being, it is exactly what you need.” Later, “I am really pleased about your white blood count. That is really good news. You are going to beat this, Toria!”
A few other exchanges followed, mostly about how great, nice, and funny our boys are. “Talk to you soon. I’m proud of you and your toughness
.” And then later, “While extremely difficult, in a way, what you’re going through is a gift. The clarity you have achieved is unusual, as is the sense of meaning. Most people go through life in a fog or confused about what really matters, distracted by baubles and trinkets. Spending these two weeks with you has been a delight for me. I have grown as well, and I thank you for that. I believe I will be able to bring some of these realizations to other areas of my life and that this will be helpful on many levels.”
—APRIL 25, 2015
CHAPTER SIX
leukemia returns: in memoriam
We all know that something is eternal. And it ain’t houses and it ain’t names, and it ain’t earth, and it ain’t even the stars…. Everybody knows in their bones that something is eternal, and that something has to do with human beings. All the greatest people ever lived have been telling us that for five thousand years and yet you’d be surprised how people are always losing hold of it. There’s something way down deep that’s eternal about every human being.
—THORNTON WILDER, OUR TOWN
After her diagnosis, Victoria asked me to relay information to our extended family because she tired rapidly and lacked the energy to respond to frequent phone calls and emails. Pat would send out useful, succinct emails updating the family as soon as there were any significant developments. With the cytogenetic testing and the determination of monosomy 7 as the underlying mutation came questions and anguish.
As a physician, I find these conversations extremely difficult. No matter how many times I find myself sitting across from a patient preparing to break bad news, I always wonder how best to navigate this sad and pivotal moment. How much should I say? What do they really want to know? How much and when do I involve the family members? Addressing the understandable fear and shock in a forthright, compassionate way has taken years of practice. This is particularly difficult when the patient is a child; I find the tone and the depth of the conversation depends on the young person’s age and maturity. I have to make a lot of quick assessments about how much information to volunteer, especially in the early stages of an unfavorable diagnosis. I take into account the extent of education and medical training that families bring to the conversation and try to present the facts and options as clearly as possible. Medical personnel speak a common language; they understand the data patterns and generally have a good sense of what the diagnosis of a specific illness implies.
When presenting bad information, I am always hesitant to speak about the patient without involving him or her in the discussion. But many patients specifically ask me to discuss their situations with their families and leave them out. My sister was insistent on limiting her awareness of survival rates and all the ways her treatment could potentially fail. Other patients feel the need to defer to their religious beliefs under these circumstances, adding a deeply personal and spiritual element to their choices about care.
As the weeks turned into months, my sister would ask me to discuss her blood counts with Pat, but not with her. She worried about the implications of bad news, as there was a tendency to hang on to every result. The blood counts and blast percentage would often set the tone for the day. She decided early on that she didn’t find this information useful and figured that if she needed blood, they would give it to her. If not, they wouldn’t. So often, patients and their families obsess over every data point they see, imbuing lab results with greater significance than they deserve. In the world of treatment, patients and their families often feel they have fallen down a rabbit hole.
This attention to numbers is particularly true in the ICU with telemetry, where respiratory rate, pulse, and blood pressure measurements (i.e., the vital signs) are prominently displayed in real time but often have little meaning in the larger picture. Our vital signs change a great deal during the day, with heart rates dropping into the high thirties when a fit person is sleeping. Similarly, heart rates will shoot up when a person is excited, upset, or in pain. The trends are usually what matters, rather than the momentary observations and minutiae.
Our mother took Victoria’s diagnosis very hard. They had supported each other through the death of my mother’s second husband, Jack, as well as through Pat’s multiple open-heart surgeries. They spoke on the phone often. Approaching eighty, she had just lost both of her sisters and a close “double” cousin. A dear friend and walking partner had recently died of dementia. My mother appeared frail. I was worried about how she would handle the stress of Victoria’s illness. I was hesitant to tell her everything I knew, but she was adamant about my not withholding information, no matter how bleak it might be. She wept into the telephone when I explained the prognosis of Victoria’s type of leukemia. My father, while shaken, dutifully waited for the group updates from Pat and the weekly sanctioned phone calls from me. He seemed to take each new piece of news with disappointment and stoic resolve.
I found it strange to be the conduit for news shared between my sister and our family. They often passed their concerns back to her through me. Visits were restricted, and Victoria had turned inward, often too sick and exhausted to engage with the outside world. She was unable to handle anyone else’s anxiety and fear; she had more than enough of her own to contend with. She was also saving her reserves for Pat and her boys.
Her days were consumed with the administration of medications and chasing the side effects. As is often the case with prolonged hospitalizations, day and night get confused and sleep becomes fitful and sporadic. She received steroids to combat possible rejection after her transplant, but these made sleep difficult. She was often awake during the night, adding to a growing sense of isolation and disengagement from her “real” life. As the transplant progressed, she faced engraftment syndrome, developing a deep red rash over her chest. Each night, her fevers would spike as high as 103°. Her lungs filled with fluid and she resorted to supplemental oxygen when she became short of breath. Feverish, disoriented, and depleted, my sister was confined to her room for the first thirty days following her transplant. These were her darkest hours.
At last, on day thirty-nine, a brutally hot day in May, Victoria was well enough to be discharged to a rental home in Pasadena, a short drive from the hospital in the event she became acutely ill. She would not be permitted to return home to Santa Monica for 100 days post-transplant. Her family moved into the rental, settling for what would be their summer holidays. Caroline and my mother, as well as several close friends, took turns staying in the house overlooking the mountains. Each guest was trained in the protocols of keeping a sterile home: wiping door handles, keeping the windows sealed, cleaning the house, and preparing safe meals. The fresh vegetables and salad Victoria craved were not allowed. Nor were raw fish or fruits without peels. Mostly, she ate cooked vegetables and prepared meals.
Those weeks coupled joy at being united with her family and tremendous fatigue. She still had to restrict contact with people, always wearing a mask and rarely venturing outdoors. Many things we take for granted are not possible after bone marrow transplant. Fresh food can carry potentially lethal bacteria. You cannot venture into public places or parks with grasses and pollens. Even though Victoria was free from the confines of the hospital, she was weak and bloated from all the medications and intravenous fluids, stuck indoors with a mask. She had frequent bouts of diarrhea and still suffered from shortness of breath.
I’m out! Free. Good Lord, I’ve got gratitude growing in every cell. I wish I was able to be at home, and yet the house Pat found is very peaceful. It seems like a good place in which to continue to heal. Big picture windows and mountain and golf course views. Very comfortable bed, comfortable couch and chairs, and comfortable deck, which is slightly less appealing given that I must wear a mask at all times when outside.
And they have been very discouraging about the sun. Apparently, I have the immune system and the skin of a newborn. Another year of this. Such a long journey.
—MAY 15, 2015
Still, she had made it to the other side of
the transplant and there was reason to be hopeful. A bone marrow biopsy performed shortly before discharge from City of Hope showed that Nick’s cells had taken over and that there were no signs of leukemic cells lurking. She was still taking steroids and an antirejection drug called tacrolimus, in addition to pain medication (oxycodone) on a regular basis for generalized bodily pains. The graft-versus-host rash was unpleasant and associated with severe itching, especially on her chest.
As Victoria grew stronger, she was able to walk one or two miles on a treadmill. She played board games with her sons and found a quiet place to rest next to one of the large picture windows. She had a view of the distant brown foothills of the mountains, which must have been inspiring. She laughed and giggled with her boys, relishing seeing them each day.
Victoria was beginning to understand the chronic nature of her disease and the regime of tests and drugs. While in Pasadena, she returned to City of Hope twice weekly for blood tests, ingesting a staggering number of pills each day. She texted me: “Wish my stuff had more of a clear ending. I’ll adjust, but it’s a bit crushing to think winning the war doesn’t necessarily mean ending the issues. Longing to be done and return to normal. Guess there will be a new normal.” Unfortunately, this is a conclusion at which many of my own patients arrive when managing a brain tumor or other types of cancer.
Stage IV. The bizarre thing is that I’m still bargaining for my own survival. Statistically speaking, we can’t all make it. Sometimes I wonder if I was slow to socialize because I was feeling dreadful and people look scary behind their masks, or was I too afraid to make a friend in case I had to hear they didn’t make it? I need to work on this.
Grief Connects Us Page 9